“When I found out my BRCA mutation at 27, I felt completely alone.” – Christen’s story

Published: 13 November 2023
Christen’s mum found out she carried the BRCA mutation 2 weeks before she died of ovarian cancer. Christen shares her experiences after she was told that she also had it. ‌

Meet Christen

Christen is a young girl and is hugging her mum

My mum was diagnosed with ovarian cancer when she was 62 years old. We didn’t have much cancer that we knew of in our family. If there was, we never knew about it.

My mum was tested for the BRCA2 mutation and she found out 2 weeks before she died that she carried it. 

Without my mum’s test, my brothers and I would never have been eligible for genomic testing ourselves.

She died within nine months of diagnosis, so it was quite quick. She didn’t really understand what having a BRCA2 mutation meant. I thought it was likely I’d also inherited it and got tested immediately.

I was 27 when the medical team confirmed I had the mutation.

I was told they wouldn’t do anything until I was 30. When I was 30, I was able to start to make life choices. I had a meeting with the plastic surgeon and I decided to have a mastectomy a year later. The team told me to not think about the ovaries until I am 40. I am nearly 35 now.

Looking back, that time between diagnosis, having lost my mum and not being able to do anything about my BRCA mutation was one of the hardest times.

You’ve got this thing hanging over you which impacts on your life and your life choices. I was in a relationship and we were thinking ‘maybe we should have kids earlier, then I can breastfeed before the mastectomy’ and thank god we didn’t because we split up shortly afterwards!

“By chatting to others with the genetic mutation you find we have so many questions.”

Women are asking questions about whether they should try and date and find someone now so they can have children in time, they are frightened of dating after having a mastectomy or how a partner would react.

It isn’t quite a diagnosis of anything, it’s a predicted risk of cancer, which might never happen, and it’s a weird thing to sit with.

I found out when I’d lived life a little, I had been through a loss and I was in a good place in my career. If I’d have found out when I was 18,

I do not know how I would have coped with it. It was a positive to have had three years to process the news, some people find out when they’re 30 + and they’re immediately thinking about surgery. Really, there’s no ‘good time’ to find out, it’s more about being supported through the process.

My surgeon was brilliant, and my nurse was a brilliant nurse, she founded Keeping Abreast. I couldn’t fault them. I was lucky I had Keeping Abreast, in Norwich. I attended that and I help them now. I have heard that there is a disparity across the country with what support people are offered.

‌ “If I could change something, I would have liked to have been told differently.” ‌

I found out about my mutation by a letter in the post. I had just had a car crash. Then I got this letter and thought ‘something is trying to kill me!’ I would have been happy to receive a phone call, not necessarily face-to-face.

I would like to have seen more signposting to organisations and support groups who can give more emotional help. I would like to have had a 1:1 with someone who could talk to me about my emotions and how it might impact my relationships.

Interestingly, my partner at the time split up with me after my mastectomy because he said he didn’t fancy me anymore. I think I needed more support around that area.

I also think there’s a lack of support for partners. There was no one there to help him, it wasn’t my job to help him through that because I was going through my own thing.

Maybe it’s about healthcare professionals really knowing the person a bit more, not just as a patient but understanding what’s going on in their lives and who they’ve got supporting them.

“We need quicker responses for tests, diagnosis and treatments.”

It is an anxious time, and everyone needs empowering with information and signposting to support so they know what their options are.

When I found out my BRCA mutation, I couldn’t find anything that was accessible for me. I felt completely alone, and a lot of the charities I looked at catered for people under the ‘cancer umbrella’ rather than the ‘predisposition to cancer’ group.

I reached out to a few of them and was told that they weren’t really able to support me. I tried to go to a few support groups- there are some amazing ones but as everyone talked about their cancer, I felt out of place.

"I shared information on social media about my mastectomy."

I was quite open about it and had encouraging responses from people saying ‘you’re the only person who I’ve come across’ and that my content was really helpful.

I didn’t intend for it to be a charity at that point, I just used Instagram as my platform, but people started to reach out and offer to share their mastectomy images anonymously.

Instagram started removing pictures, because these were ‘boobs’, so I started my own website, where they couldn’t get removed. We are very much driven by the community of people and what they want and what they find useful.

We do peer support groups, talks about things people don’t normally talk about, like sex and dating, what it feels like and how you broach the subject with your friends.

It is very much more focused on the ‘lived experience’ – this is our community.

Learn more about BRCA genes